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Father with AML relapse nearing end of life. What to expect?

Hi all — this is my first time posting here. I joined, as my father is nearing the end of his life and my mom and I aren’t completely sure what to expect.

He first developed AML as a mostly healthy 57 y/o man and was admitted to the hospital for induction in early December 2016. It was caught very early on and completely by accident (during his annual CDL license health check) and he hadn’t even started showing symptoms yet. I think they may have given us a stage I diagnosis or possibly even less than stage I. I don’t recall. But nonetheless, given the cancer’s lack of development, chemo was a success and he was in complete remission by March-ish. The chemo had certain effects on him though, including a general fatigue and a few other minor things. So while he was cancer free, he had some “off” days where he wouldn’t feel 100%, generally, over the next 1.5 years.

About 3 weeks —> a month ago, he started feeling pretty crappy. Crappier than usual. At first it was just a nasty cough, which a doctor confirmed was bronchitis. But, even with medicine, he couldn’t totally shake the debilitating cough. I warned him gently, “you know, I wouldn’t wait forever. you should see a doctor sooner rather than later”. He told me he knew that, and that he would.

Fast-forward a couple of days, and the pain begins. An aching, at first, localized in his arms, which worsened with time. My mom took him to the ER where, eventually, the worst case scenario became reality. His AML has relapsed, this time with a mutation that makes it even more aggressive than its usual level of aggression.

The hospital gets control of his pain, finally, and tells us that a bone marrow transplant will be necessary. With Chemo alone, there’s a very high chance of relapse again. Even with a bone marrow transplant, there’s a high risk of a disease where the body rejects the new marrow, or whatever, and you die.

No, no, he wouldn’t be having any of that. “Oh, well there may be clinical trials available. We can loo—“ nope. He decided he’d like to come home, and get comfy. He’s done with it all.

He’s been home for about 10 days now, maybe two weeks. I live in a big city where I go to college, but I’ve moved back to my parents’ house and have been commuting to classes 3 days a week so that I can be with my dad at every possible moment. My mom takes him for platelets and red blood twice a week. It’s scary, what untreated, aggressive acute myeloid leukemia can do to someone in just 10 days. Food, mostly all of it, tastes like absolute rubbish (no, I’m not a Brit). His taste buds have hit rock bottom. Starting about 3 days ago, most things he ingests come back up within a half hour. This includes pills, the medications he needs. This includes fluids. He’s constipated. He’s definitely dehydrated; I don’t see how he couldn’t be.

He and my mom are traversing the snowstorm this afternoon to get him platelets and blood and, hopefully, fluids.

Anyway, bless you if you’ve read this whole thing. My mom and I are upset, of course, and we have our good and bad moments. I had my first panic attack last week. We’ve both been on a very light dose of Xanax, as needed. But, we’re not immobilized by the ordeal, by what’s impending. We have a great familial support system and each other.

So, I guess this is my question: to anyone who has dealt with impending death of a loved one with leukemia (or any cancer), what should we expect? More than anything, it’s a fear of the unknown for my mom and I. Well, me anyway. I’ll speak for myself. How will he go? In his sleep? Will it be in extreme pain? At what point did you involve a hospice team/service if at all? As an estimated timeline, his doctor(s) said “weeks”. This was two weeks ago. They were certain it’d be before Christmas. And of course, I understand that no two cancer experiences nor two bodies are alike. I guess I’m just looking for a rough idea of what to expect in his very last days. I think it may help alleviate any potential shock factor.

I'm very sorry to hear of your story with your father. I don't know the specifics of AML, but 60-ish is far too short a life.

You seem to be handling all of this in a very rational way, and I'm so glad to hear that you have your family to support each other. You also seemed to have accepted your father's decision, because ultimately, he is the patient. Only he knows what he can handle in terms of treatment and pain.

If you have not yet pursued it, I would seek some kind of in-home hospice care. I knew a woman who died of metastatic breast cancer just over a year ago, and she has such an arrangement. The idea behind the hospice is to make the patient's life as comfortable as possible. An in-home hospice care allows the dying patient to be with his loved ones, in a comfortable setting.

As for your father, it's difficult to say how quickly he may go. If he's unable to eat, that will become a problem, quickly. There should be a way to treat any pain using injectable pain medication, but without nutrition, the body goes quickly. As you pointed out, what's quick for one person isn't always so for someone else.

There are many resources available, but I am including the following that could be of some help for you.

I am also saddened to hear this. Hospice is a very good thing, and designed to make his days as comfortable as possible. Do check into that - the sooner the better. As to tnhe end, leukemia slowly takes over the blood supply, at some point eliminating his ability to fight infection. Recently and famously, Paul Allen died - not of lymphoma, but of sepsis, his body's inability to fight infection off. I would imagine that multi-organ failure or sepsis would be the likely end of life for leukemia patients.

Still, good on you for spending as many momonts with him as possible. This is to your credit. Fond memories, and the love of your dad will never die. They are locked in your heart.

Indylou and po18guy, thank you so much for your kind words. Surprisingly (in a good way) for us all, it's been three months since my first post and my dad is still with us, albeit only barely. He had enough weight (something like 320 lbs) on him in the beginning that his not eating much really wasn't a problem. He's dropped to about 240-250 now. He's extremely weak and was unable to muster the strength to make it to the hospital today for his infusion. His gums have been bleeding a lot all day and he has blood marks (red dots, I forget their name) all over his calves. He very obviously needs platelets and red blood TODAY, though he requested that we reschedule for tomorrow. He told my mom this morning that he believes his end is near. For leukemia patients (at least with our hospital), going on hospice means that you no longer receive red blood and platelet transfusions, so naturally it's something my dad has been avoiding for quite some time. Even hearing the word sends him into a fit of denial. He wasn't ready for hospice for quite some time (3 months!) But, his condition is clearly deteriorating now - fast. And we doubt he'll be feeling strong enough for his appointment tomorrow, either. We think this is it.

It's strange. I've had months to digest everything, which I think i've done pretty well. I was never close to my father on any serious level - though this process has still been difficult, especially when the care receiver is a very stubborn and largely self-centered person. But, I love him nonetheless. I don't know who's listening to this, but it feels therapeutic to vent. So thanks, whoever you are!

December 2016 - Father diagnosed with stage I AML
January 2017 - Complete remission following initial induction
October 2018 - AML relapse with 82% blasts and FIT3-ITD+ mutation. Refusal of treatment.